Anniversaries and memories

One year ago, we came home from the hospital after a grueling post-transplant week. I have said this before, but that week was in many ways harder than Daphne’s five months in the NICU. The NICU was five years ago, and some of that pain and trauma has been blunted by time, but what made the transplant post-op so difficult was that I was alone with Daphne pretty much the entire time, and I never got to leave to clear my head. In fact, I had few chances to leave the side of her bed, and she demanded physical contact with me every waking moment. By far, the most heart-wrenching aspect of her recovery was that she was clearly in pain, and expressed her misery and discomfort in a way she couldn’t when she was a neonate. There was whimpering, screaming, wailing, and begging. There was fear, protesting, and utter lack of cooperation. All completely understandable and expected under the circumstances.

Last week, when I mentioned to the Daphne that it had been a year since the surgery, she said “I remember that. It was painful and hurtful.” She has been using those two words interchangeably lately, but here she used both for emphasis. I was about to tell her that now she was OK and so healthy because of her new kidney, but I caught myself.

It’s a funny thing that we parents do. There is nothing more painful to us that our children’s pain, sadder than their sadness. To protect ourselves, and them, sometimes we have a tendency to try to convince them that their pain is not real, that their suffering is done. “You’re OK,” we say, when they are crying because they got hurt. We tell them that procedures aren’t going to hurt, when in fact they will. When they recall painful memories, we tell them that it’s passed, now everything is OK. I get that it is not good to dwell on the negative, and that we are happy when our children are happy. But in doing that, we rob them of the opportunity to talk about what bothers or hurts them, which, as all of us who blog know, can be an important way to make sense of the pain and hurt, and an essential part of healing.

Daphne is five years old. She can’t completely understand the fact that the kidney transplant saved her life and made her healthy, but she can definitely remember that it hurt and she was scared. She is entitled to share that memory, express that pain, no matter how much it hurts me. 

“It was very hurtful, and Daddy came to see me and showed me the pinch on his wrist. Daddy got to go home and we had to stay longer. You held my hand when I slept. Jill brought you coffee every morning. They made me blow bubbles, but I didn’t want to.” 

The details that she remembers come out in different ways, at different times. Thankfully, she does not remember that the resident botched inserting a Foley that she didn’t even need, and she doesn’t know that I still blame myself for not making it stop. She doesn’t remember that she didn’t smile for days, and that I was terrified her personality would never come back. She wouldn’t even believe that every time she had to take a medication, I had to beg, plead, and finally threaten. She does, however, remember how she felt that week, and only now, a year later, she is starting to talk about it. The road to healing is long, but we keep walking.

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7 responses to “Anniversaries and memories

  1. I am so grateful to have found this post. I have been searing for life stories and experiences just like this. My daughter is 2.5 and has stage 3 CKD. She’ll need a kidney transplant but we aren’t sure when. Thank you for posting this and being so honest about your daughter’s experience as well as your own.

    • Thank you for your kind words. We played the waiting game too. Daphne had to be big enough for the surgery (large kidney, small abdomen) and she had to be sick enough, but not too sick. Our team wanted to do it preemptively, before she needed dialysis. It was stressful, and we pushed it to the limit. I am happy to give you all the details about the surgery and post-op when the time comes. Recovery was not easy. But I also did not know just how much the CKD was limiting her life.

      • You are too kind to offer us some guidance and help, from your experience. If you’re willing to share, I’d love to know now. I realize it’s premature but I can’t really find anything in the literature that’s truthful or authentic to the patient/family perspective. It will be interesting to see the pre and post transplant child. Thank you again.

      • It is my pleasure! Feel free to send me an email to melissa.haber@gmail.com. I can tell you the good, the bad, the inspiring, the ugly. I, too, always prefer to know in advance.

      • Thanks Melissa! You’ll be hearing from me. I’m at carolemoss@gmail.com

  2. There is so much wisdom in this post, Mel. Daphne (and Lucy!) are lucky to have a mom who is not only tough enough to care and advocate for them when they need it, but also compassionate enough to let them acknowledge and name their pain and worries when they need to. A model for all of us. xo

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